It all starts in the pediatrician’s office, shortly after your baby is born. Questions like: “How many ounces are you getting into him?” make you feel like there is a perfect ounces-per-day number and you can only hope you’re close with your answer. Those are the standard questions every mother is asked. Then more questions: “He doesn’t like to latch? He vomits up his feedings 10 minutes later?”
Suggestions pour out from the well-meaning doctor, because after all, you need guidance since not only are you in a state of intense fatigue, but you have never experienced a child quite like this one before.
Doctor: Do this. Try this. Come back to see me in two days, or tomorrow if he keeps vomiting. It’s probably acid reflux (GERD). Let’s try a hypoallergenic formula.
Mother: YES, I’ll come back in. I’ll do anything to get this baby to do what he should be doing: taking in 15-20 ounces a day without vomiting. Oh, can you get him to sleep more than 1.5 hours at a time, please? (I’m a mess.)
As time passes, you take your baby to regular doctor visits at 3 months, 6 months, 9 months, 12 months. Each time you are asked the standard milestone checklist questions about the progress of your child. How much babbling? How many words does he speak? How many hours of sleep? Is he crawling yet? Weight and other measurements are recorded.
He’s not yet hitting his milestones according to those printed checklists but during each visit, the pediatrician is kind enough to remind you that kids develop at their own pace. He’ll hit those milestones next time.
You hold onto hope that he will catch up. He will. He will. He will. Please.
Then the second year comes, and he is just different. So very different. You’ve suspected it for over a year, but now it is really starting to become a reality that you cannot dismiss. It becomes clear that he is not like your other babies. He isn’t easily soothed. He doesn’t use his words. Instead, he screams for hours and throws toys and food at you. In fact, he’s just not fun at all much of the time. The only respite you get as a stay-at-home mom is when he naps (if he naps).
He’s beautiful– those large brown eyes with sweeping lashes. You wish he could just tell you why he is so seemingly miserable. It sure would be nice if he would stop screeching at you over a dropped Cheerio.
You love him immensely. Although you resent him frequently, you know it’s not his fault. But still…you’re a tangled ball of emotions and the one that eats you alive is guilt. Guilt that you even feel this way. Guilt that you, after birthing 2 neurotypical children, are so ineffective as a mother. “What’s wrong with this child? What’s wrong with me?” you ask yourself at night when you should be sleeping. You recognize the way he seems quickly overloaded, the way he breaks down so easily, and certainly his lack of verbal communication, which further complicates these symptoms.
You’re mad and sad and down and determined (to seek out answers) – all at the same time.
DEVELOPMENTALLY DELAYED is the first label given to him as he nears his third year of life. You have a special needs child. You have a child with a disability. Now what? You are told by the pediatrician he would benefit from early intervention services and other forms of therapy.
It’s a painful and excruciating process of figuring out how to help your child but you soldier on because what choice do you have? This is YOUR CHILD. YOUR BELOVED. Of course, you will help him in any way you can.
Some days are so hard you don’t even want talk about them with your spouse, and you definitely don’t share the specifics about this child with friends whose kids are neurotypical. It can be so hard to listen to other parents talk about how their child is a picky eater or not using full sentences yet when your child is throwing food off his tray and is only using 1 word: NOOOOOOOOO!
Some days are better. Some days offer sprinkles of light that remind you: He is getting better with the recommended therapy even if it is hard to drag three young kids to the therapist’s office multiple times every week. He’s learning from professionals that have been with kids like him for years and you are also learning how to respond and parent him. It’s like a rebirth, for both of you. It takes a lot of time and an incredible amount of patience.
You are forced to reset your expectations, to focus on 2-3 miniscule, drilled-down goals for your special child. These goals are written out by the therapists and assessed after each therapy session. They help you focus on just a few tangible objectives.
Goal 1: Brady will use the word ‘STOP’ to tell Ms. Ashley (therapist) when he wants to stop a given task. Brady will do this 2 out of 3 times during his session.
I would read these goals and they gave me a renewed sense of hope. Baby steps building up to an overarching objective – using words, then phrases, then sentences, then focusing on tone/volume of voice when speaking. Supportive, trained therapists taught me and my son the essential building blocks that allowed him to progress developmentally. When you have a special needs child, you need to see splinters of progress after the supports are put into place. You reset your own expectations into smaller, bite-sized pieces and every step forward is exhilarating because it reveals that NOTHING IS STATIC about any human life. Unceasing love and support can cause even the smallest miracles to happen!
Small steps are always worthy of celebration. Never wait to rejoice until you’ve conquered the mountain, highlight each step forward on your way there. Be present enough to see the progress that is being made right in front of your face. Recognize those miracles!
Mothering a child with special needs is a mighty journey indeed. It requires a complete shift in your mindset. You must reset your own expectations, realizing your child needs intervention but that’s okay. You must allow yourself to feel gratitude for the fact that you have found the outlets for intervention, that others are there to help make a difference in your child’s life. It’s a humbling experience but you are not the first one to travel down this road, so reach out and find your tribe of people who understand what you’re feeling.
Here is my brief list (in no particular order of importance) of five key areas that will lift you up as you boldly walk this transformational road with your beloved, unique child:
- SUPPORTIVE THERAPISTS AND TRAINED TEACHERS
These people continually remind me of how far Brady has come. They are the change-makers. They always fill up my bucket with so much hope for his future. They are the cheerleaders who fill me with optimism. They help me steer the boat in terms of what my child needs at a particular juncture and how we (as a team) can get there.
“I cannot emphasize the importance of a good teacher.” – Temple Grandin
- FRIENDS WHO ALSO HAVE A SPECIAL NEEDS CHILD SIMILAR TO YOURS
You need an outlet to freely express your concerns without judgment. Special needs parents are a force of warriors that have empathy like no other. They will rejoice with you over every accomplishment your child makes because they sincerely understand how hard it is to master goals that once seemed impossible. You’ll lean on each other more than you can anticipate. These friends will be your safe spot to be open and free. They will help you see the light when you have those very hard days.
“It’s lonely. But when you find someone who gets it, it’s transforming.” – Melody Statham Cameron
- BOOKS ON TOPICS PERTAINING TO YOUR CHILD’S AREA OF NEED
There are more and more books being written about your child’s specific area of disability. Seek them out and ask special needs parents what they recommend. Keep reading because a great book will help you better understand your child and his needs even more.
- A SENSE OF HUMOR
If you are lucky enough to find a few special needs parents who understand the struggles of your child because their child has (or has had) similar struggles, then you will find yourself laughing at some of the wonderful absurdities of it all. There is so much humor that if you allow your mind to see the funniness of the chaotic world of parenting, you will most certainly find it in most situations. Laughing relieves a tremendous amount of stress and helps you think more clearly when you feel overwhelmed. Memes are a fun outlet to have a hearty daily giggle.
- NOT PLAYING THE COMPARISON GAME
You should choose to focus on the progress of your own child, comparing them only with their past self. This helps you recognize their personal progress and feel gratitude for the amazing changes that have already occurred. Your child is a wonderfully unique human being who deserves to be celebrated and supported in every way possible. Do your best to not allow your mind to go down the rabbit hole of “I wish he was like this person who can read 50 words a minute in his third grade class” or some other comparison to a child who is your kid’s age whose doing ‘xyz’ already. Perhaps memorize a powerful saying that you repeat to yourself when your brain suddenly grieves what might have been if your child did not have real struggles. Here is one that I like:
“The most interesting people you’ll find are the ones that don’t fit into your average cardboard box. They will make what they need, they will make their own boxes.”
-Temple Grandin
I can so relate to this. It took me six months to restate (after a two-year appointment about lack of language) to our pediatrician that NO, everything isn’t fine, and he’s not “developing at his own pace.” It took a lot more years (and will continue maybe forever) to say he’s not caught up, and that catching up isn’t what it looks like to others, all the time. Years ago, I wrote about “no he won’t catch up” because it’s so frustrating when we know in our mama hearts that something’s up and needs to be addressed. Great post as always! <3
Always trust your gut and momma instincts. We always know our child best. Thanks, Kristi!